Seniors, I would like to know who all of you suffer with Fibromyalgia and to what extent ?

Question

Mine is severe, I worked with it for 6 years in a very stressful job that I truly loved but finally could not work at all. I am able to take care of myself, and help others to some extent but mostly in warm weather. The winter is hard but the spring is really tough to manage as I live in WI so lots of rain. Also do you have chemical sensitivies?

The pain can be bad but can also be handle for the most part. The fatigue is there, I just need to learn how to pace, not my nature..A type personality.
Truly the most difficult thing is that you look normal and people think you are faking, or using the system, or avoid you, or think you are not reliable and so they stop calling, your kids get angry because you can't do what other parents can do and they are resentful.
My husband left me, he thought I was crazy because I was fine one day and not the next.
This is truly the hardest part Abu.

Swanjarv can't find the site?!

My Doctor wants me to try Lyrica, which is a drug that has been used for diabetes and I think for nerve pain. There is very little research on it and the most common side effects are dizzyness, and tiredness. I am not sure if that goes away. The drug goes through the liver so if one has liver problems they are not to take it. I saw a study which showed that it did cause cancer in mice...but I hear none of that from the company making it. But it would not surprise me...this would be a good way to get a lot of people off SSDI. I don't trust this govt. or president at all. But I will try it.

Answer 1

I was diagnosed in 91. For the first 3+ years I was in horrible pain constantly. I was on prescription pain meds every 6-8 hrs every day and on some days taking a muscle relaxor on top of that. There was a time when I could barely get out of the bed to go to the bathroom. I could not shop and buy groceries alone. I was a lump of pain and muscle fatigue not to mention the problems with fibro fog. I have been taking Guaifenesin for my Fibro for the last 8+ years. I have not had to take prescription pain meds for the last 5 yrs. I occasionally take Ibruprophen for pain especially if I have pushed myself physically. it is not a med that you can just go get and take. You have to learn how to take the med propery for it to work on Fibro. Here is a book to get:
What Your Doctor May Not Tell You About Fibromyalgia by Dr. Paul St. Amand

Here is a website for information and it has a link for an online support group for those who follow the Guaifenesin Protocol. It is...........
www.fibromyalgiatreatment.com

It is not a cure nor is it a pain medicine. But it helps tremendously.

Answer 2

I have Fibro - was diagnosed in 1988 - when it was first given a name. Mine is listed as Chronic. I tried the Lyrica but am also an A-type personality and if I cannot move around I get upset. Lyrica makes you so sleepy it's ridiculous. Also I had trouble pe--ng while taking it. I have survived the pain and the sleepless nights for about 30 years - hind-sight being 20/20 I realize that I have had this stuff since I was in college. One thing is for sure - stress will exacerbate the problem. I take Klonopin at night to ensure SOME kind of sleep! No hangover with this stuff either. Edit: Watch your weight - Lyrica puts lbs. on. Stay off carbs and you will feel a lot better! Be sure to do your stretching exercises! They really help! CJ

Answer 3

Thank you so much for the question! I am new to it. So you and everyone who answers this question can consider themselves my therapy group. I don't know much about it except that I am in pain and can't walk very well sometimes. Usually while under stress. At first I thought that it was my back again. So I went to the chiropractor several times a week for a month with no improvement. Or very little improvement. He took an x-ray of my lower back and found some calcium deposits in my hip area on both sides. It isn't attached to the bone and looks like a piece of coral. He thought that I should see an MD and take the x-rays with me. I thought I was going to an arthritus speicalist, but my doctor scheduled me for another x-ray instead. Which didn't help. I went back to my old pain doctor. he couldn't put his finger on anything either. I changed doctors. The new one made me an appointment for blood and urine tests. I have no sign of arthritus or osteoprosis in my blood, so he decided that I have fibromyalgia. He perscribed some pills and sent me on my way. This pain lasted almost three months. I have pain in the back of my neck in a couple different areas, wrists and hands, lower back, hip joints. knees, even my feet. The left foot hurts on top and the right foot hurts on the bottom under the arch. My left hand is killing me, has been for at least five months. I am going to see if it's carpal tunnel next week. But the main bout of the fibromyalgia has been gone for a month. I expect if I really do have it, it will return. Thank you for the question. I probably can't help you, but you can help me by just being here. Love Granny

Answer 4

Well, at least we know we're not alone in this, Peapie! It's after 2 am and here I am....on the computer because the pain is keeping me awake. Won't go into a lot of details because they've already been covered by our friends above. Just want to add that the worst was all the years of not knowing what was wrong, and especially being passed off from one doctor to another. Haven't quite figured out my own triggers yet..it just seems to flare up and hit hard. Hate how it's effected so many areas of our lives..relationships, jobs, etc. Seems that maybe we should all get together and be each others' support system.

Answer 5

I am a fellow fibromite. Can't say how long I suffered but it was diagnosed in early 90's. I've learned to roll with the flow. The reality of facing I could not do so many physical activities I had done took me years to get over. We must faced the fact we have it and we will have good days. Be thankful we did do the things we have when we were able. I look young for my age but somedays feel at deaths door. There are natural supplements, Dr. meds and diet to work with reaching your peak. My Dr. had me stop all supplements until we got the fibro under control to a degree then add them one by one.
Dominie Soo Bush has a website that is very good and a Yahoo group that just started last week and has 150 members. Good luck! We will share more about this for there are quite a few of us suffering with the chronic pain, fatigue and brain fog. I've gotta go get some gifts wrapped for the out of state children. But I am making a note of all of you who answer.

Answer 6

I've been diagnosed with fibro for about 20 years. I had it before but didn't try to see an MD for it. I was relieved when I got the diagnoses because it doesn't cripple. I was worried about being all crippled from arthritis.
Hot baths, stretching, rest, sleep, mild exercise are helpful for me. I am 63, still working. I will not let it beat me!! I plan to go on living my life fully. I take herbs which are most helpful. Rarely need pain meds since started the herbal concoctions.
Weather changes are the worst for me. Either to nice weather or bad weather. Doesn't matter. Just the change.
My daughter has it too.
I have asthma which reacts to some chemicals and especially mold.

Answer 7

I too have Fibromyalgia, It is very painful and I am on several meds for it. I also have a degenerative spine. It is in my spine, my hips and my feet burn like hell. Mine is severe as well. Now it has started affecting my left shoulder, an old injury, which wakes me up screaming sometimes in pain, which affects my sleep.
I , like you, am a type A personality and it's been very hard to slow down. But as you well know, this will bring you to a halt real quick.
I have a very hard time just getting out of bed in the morning, I have to take my pain med an hour prior to getting out of bed.
I am young at heart and in spirit. I have so much that I would still love to do, but most days I do good to go outside and water my plants.
I keep hoping for a miracle, because the pain can be maddening.
I force myself most times to do things, just to spend time with my husband. He has had a massive heart attack and I'm afraid he may not be with me much longer
I think most doctors are quacks, if I could only find a decent doctor. My doctor tells me this is it, all he can do is prescribe meds. I just have a hard time believing there isn't more that can be done.
Am I killing myself with all these meds? Only time will tell.
I would do just about anything to get some real relief.
I have a wonderful husband and his family has been with me ever step of the way. They realize exactly what I am going through. We just lost his Grandma who suffered terribly with Fibro and arthritis. Little Granny just withered up, like a spent flower, she was in so much pain., she prayed to die. Her prayers were answered
I cannot stand the cold weather, the cold only adds to the pain. I have moved south, yet we still have our cold days.
All I know is I cannot stand or sit for 30 minutes at a time, which makes shopping very difficult.
I wish you well and happiness with the new year approaching.

Merry Christmas

Answer 8

I do not have Fibromyalgia but I have Multiple Sclerosis, they are both auto-immune diseases. I had several times thought it was Fibro because of some of my symptoms. But last year I had a bout of "optic neuritis" where I lost my vision and an MRI showed the lesions of MS. This "exacerbation" was simply horrible and is what pushed me to take extreme measures.

I was diagnosed at a huge internationally known medical institution and the neurologists wanted me to start a course of treatment that involved daily injections. I am a complete cynic on western medicine so took my health into my own hands and have gone completely holistic.

Today, I feel better and have more energy than I have in 30 years! I was on Cymbalta for pain and depression and even was able to completely stop the medication because I DON'T NEED IT!! I recommend you try what I am doing........it won't hurt and can only help;

1. Avoid all aspartane or any other artificial sugars.
2. Eat completely organic foods that do not use pesticides.
3. Eat only whole grains.
4. Drink copious amount of water.
5. Take a good vitamin from a health food store. (not the junk they sell in the big box stores.)
6. Get at least 1 hour of sunlight daily.
7. Yoga........it relieves stress and is wonderful in relieving your pain.
8. Walk at least 45 minutes daily.
9. Stay completely away from refined flours and sugars. (as your health improves you can ocassionally eat them)
10. Try to avoid stress. (My job was in high level business to business sales. I loved the stress and my job but never the less the stress was killing me.)
11. Eat only fresh fruits and vegetables. Shop the perimeter of the grocery store and avoid the already prepared foods.
12. No fast food.........NONE!
13. If you eat at restaurants (I recommend you don't while your body is adjusting to the diet) drive the server crazy asking questions about how the product is prepared.
14. No alcohol.......NONE!
15. No coffee..........NONE! (this was particularly difficult as I used to drink at least 10 cups a day to improve my energy)
16. No nitrates, or MSG.......NONE!

I do not feel deprived and this mode of eating has just become natural and desirous for me. I swear by it and urge you to at least TRY it. Also, do a search on the internet for recommended vitamin supplements for Fibro. There are several recommended for MS and I take them.

You are what you eat, and the body is a wonderous thing.......it CAN cure itself, if you feed it right. Feel free to email me if you have questions.

Good luck, you CAN change your health and your life!

Answer 9

I have Fibromyalgia, and have had it for many years now.
I also have arthritis's in my fingers, hands, legs not sure were the Fibro ends and the arthritis begins.....
I am sorry you have Fibromyalgia it is such a stressful, misunderstood, chronic syndrome. I have pain and fatigue. I am also going through menopause with hotflashes that wake me up a lot during the evening and early morning it is 4:40 am here.FMS has severely curtail my social activities.
I think the worse is the lack of understanding of this invisible illnesses. I have good days and bad days and sometimes I feel like people must think am pretending. I do not have chemical senitvies...

Answer 10

I have had it for many years as well. I also had reflex sympathetic dystrophy, my husband thought I was imagining the paid and threw me out. I needed spine surgery, I have had several and am better now than before. I hated it when people didn't believe me. I gave up processed food, only natural, no packaged foods, I also do some exercises which seems to help. The biggest help was getting away from that idiot, the stress made it 100 times worse. I looked back and it seems to have started about the same time I was under a lot of stress from him, previous IRS problems, ex wife problems, son problems, his drinking, always going to court because of his ex wife and his cruelty.